Last week I began a series of roundtable sessions with the staff of one of
my social care consultancy clients looking at changed behaviour for
people who are living with dementia.
The
topics for discussion are pretty diverse, everything from verbal and physical
aggression to repetition, paranoia and accusations, walking and restlessness
through to anxiety, tearfulness and feeling emotional, wakefulness and
disturbed sleeping, through to losing, hiding or hoarding objects/items and
losing sexual inhibitions.
Whatever
direction our conversations go in, the focus is on understanding and
supporting the person with their symptoms, and if possible finding ways to
alleviate those symptoms. I am completely against any references to challenging behaviour and the inevitably negative pathway that terminology leads us down.
I have written before about the need to understand that any behavioural changes a person with dementia is experiencing are most likely due to an unmet need. In essence, behavioural change is a way of communicating when trying to
make yourself understood in other ways simply isn't possible because of your
dementia.
The
cause of behavioural changes can be physical (something happening in the
person’s brain because of their dementia or another physical or mental illness)
environmental (including within a previously familiar environment) or human (directly resulting from being in the company of a
person or persons). Sometimes there is no obvious cause at all, which is why
behavioural changes are so difficult for the person themselves to cope with,
and for those around them to support appropriately.
Reverting
to medication is, for me, the absolute last resort (See my blog on the 'chemical cosh'),
and as understanding of dementia grows I hope that more health and social care
professionals will embrace a care and support approach rather than a medication
approach, and indeed families and people with dementia themselves will advocate
ever more strongly for this.
As
someone whose father was medicated with antipsychotics (and other sedating
medication), I know first-hand how dad’s symptoms improved when that medication
was removed. But what are the options if you want to take a care and support
approach? My top tips are:
Person-centred support at all times
The person at the centre of their care and support at all times might sound like a simple idea, but it still doesn’t happen universally. Pay particular attention to listening to the person and observing their body language - it will tell you a lot about how they are feeling. Empathise and understand, tuning into the person’s needs (either explicitly stated or what you can learn by reading between the lines), and reflect on your interactions - what have you learnt? What could you change?
Ensure the person has access to purposeful and meaningful (to them) occupation
Occupation is many different things to many different people - it may be something personal to the individual (like a hobby or interest), it may involve being supported to care for themselves (For example, with personal care or when making drinks or meals) or it may involve doing things for others (For example, advocacy, volunteering, using craft skills to make useful items, befriending or peer support). Whatever occupation means to the person you are supporting, make sure they have the opportunity to pursue it to the fullest possible extent.
An environment that is responsive to the person’s needs
Environment is so often overlooked when thinking about supporting a person with dementia. A ‘dementia friendly environment’ may sound like a cute and cuddly phrase, but it’s actually really important, and it’s about a lot more than just signage and red toilet seats! If the person is disorientated in their environment, frustrated at being unable to navigate, feeling unsafe, confused, or angry as a result of their surroundings, it will undoubtedly feed into distressing behavioural symptoms for the person.
Preservation of the person’s independence and individuality
When a person is diagnosed with dementia, the tendency is often to do things for them rather than with them. Big mistake! Involve the person in everything you are supporting them with. Avoid being risk-adverse, and give the person the opportunities they need to be themselves and to shine. Embrace the person's life story and everything that makes them who they are.
Ensure that the person isn’t experiencing any undiagnosed pain, symptoms of another physical or mental health condition or side-effects of medication(s)
Get concerns about other health problems checked out, being persistent with health professionals if necessary. Be particularly mindful of any pain problems, as these are often missed in a person who is living with dementia. Pain can be extremely debilitating, affecting the person’s whole outlook, and chances are it will be a contributing factor in any behavioural symptoms they are experiencing. Also be mindful of the effects of medication(s).
Support for the person’s wellbeing and positive relationships with the individual(s) involved in their life
Never underestimate wellbeing. It’s a barely understood word (which means to be comfortable, healthy and happy) that can have big implications when a person with dementia isn’t experiencing it. Equally, fractious relationships (which are common, particularly in family situations) are very counterintuitive when it comes to supporting behavioural symptoms. For family members in particular, being aware of how to improve your own wellbeing and participate in healthy relationships is as important as focusing on these aspects for your loved one. If you project a positive approach (For example, I endeavoured - although didn't always succeed - to never to cry in front of my dad) that will rub off on those around you.
Of
course, in a perfect world everyone’s care and support would follow these
principles. If it did, many of the changed behaviours that are associated with
dementia would be greatly reduced, and for some people, barely noticeable at
all. Perhaps then, the greatest tip of all is to say that it’s never too early
to begin these good habits. Waiting until the person you are caring for is living
with behavioural symptoms associated with their dementia isn’t too late, but it
certainly isn’t as early as it could be.
The
power to turn around the tide of ‘challenging behaviour’ negativity and show a
caring and supportive approach to the changed behaviour that is associated with
dementia is something that rests with each one of us, no matter what our role
or responsibilities.
You can follow me on Twitter: @bethyb1886
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